Intracranial Hypertension (IH) is a rare and complex neurological condition, and those living with the condition are socially isolated and geographically dispersed. 

The medical meta-narrative around IH overlooks the expertise of those living with the condition, contradicting the principle of 'Nothing about us without us'. The IH community has only ever been framed by the medical context that reduces people with IH to 'patients' and members of a 'clinical cohort'. By reimagining the social connections of this fragmented community as a "social world", I demonstrate the connectedness of people with IH through an expansive social network that has developed on Facebook and the nuanced way they engage in virtual spaces to connect, legitimise their experience, and build capacity and experiential expertise. 

As part of a larger doctoral project, I discuss how I leveraged the researcher's insider positionality to access this virtual community, engaging 563 adults in a qualitative survey. 101 participants were engaged in a long-form asynchronous group format, mediated through the familiarity of the Facebook environment, enabling deep exploration of illness narratives and collective discourse about their needs, desires, joys and challenges, demonstrating their deep experiential expertise and social capital. I describe how centring the unique needs of this community in the research design facilitated a diverse, global research group spanning multiple sociocultural contexts and accommodating variable health and life demands. I argue that engaging with the social capital of these undervalued and difficult-to-quantify digital-based 'communities of practice' alongside medical expertise creates strong opportunities for collaborative knowledge building in the future and moves toward a shared epistemology that may begin to redress the invalidation and epistemic injustice experienced by this population. 

While this study focuses on IH as a case study, it may be generalised to other socially isolated communities.